Eccentric, tea drinking, stationary addicted cat lady. Living with multiple chronic illnesses and a multipack of crisps, you'll most likely find me with a cup of tea, a new notebook and my kitty cat. Or in a hedge taking photos of wildlife. So grab a cup of tea with me, sit down and get stuck in.

Tag: fibromyalgia

Insomnia is something I have lived with for many years. It really started to hit when my fibromyalgia symptoms began after my accident five and a half years ago but I’ve never been a great sleeper.

As a child I always thought it was normal to go to bed and lie awake for an hour or so before dropping off. I’d frequently have nights where I’d lie awake until gone midnight, which felt so late when I was under ten as you need so much more sleep as a young child. Those days at primary school that followed felt endless, the light from the projector in class (yes I’m that old) burnt my eyes, other children would ask why my eyes were so black and the days felt endless. Days like this usually continued for a few days until my sleep somehow reset itself.

When I became unwell with fibromyalgia my sleep became very erratic. Not only would it still take an hour or so to get to sleep but I’d wake up every hour or two and struggle to get back to sleep. I’d wake up with a jump, or at the sound of the cat meowing in a different room. I’d always been a light sleeper but now the sound of my partner breathing beside me was enough to wake me up.

I started taking medication that helped me sleep a bit better. Amitryptaline didn’t help me get to sleep as it was supposed to but it did stop me from waking up with a jump a much. This medication was changed to pregabalin a couple of years later to help treat pain but I found it had the most impact on my sleep. Again, it didn’t help me drop off but it made a big impact on the quality of sleep. Once I was asleep, the pregabalin seemed to ensure that I stayed asleep until the morning. At this point I was managing about six hours sleep a night. Not enough, but manageable.

As my health continued to deteriorated and a diagnosis of Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS) was made I started to be unable to function after work without a nap. As time has gone on my work days have got shorted and the naps have got longer varying between one and a half hours and four hours as the week goes on. I have found that on days I force myself to stay awake all day and end up feeling exhausted beyond words I have an even worse night. Recently I was awake until 5am after an especially long day. I had been awake for twenty one hours. My new frame of mind is to just take sleep where I can get it as the less I nap, the less I seem to be able to sleep at night.

Over the past few months insomnia has shifted to a new level. I am frequently awake until past 3am when my alarm goes off around 7:15am. The sleep I do get is broken, light and filled with vivid dreams and troubling nightmares. On the three days a week I don’t work I try and let me body do it’s own thing and make sure I don’t plan anything for the morning of those days. This often means sleeping from around 3/4am and waking up at 10/11am. I have read this is common in ME/CFS patients as the body doesn’t produce the sleep hormone, melatonin, at the correct times.

I have been struggling to function on such little sleep despite the fact I thought I was used to getting by on just a few hours. This has lead me to try different things out to try and help. Nytol worked the first couple of times, after half an hour spent hallucinating in bed I had a decent night of sleep. But this soon wore off and now makes not an ounce of difference. Pukka Night Time tablets help me feel sleepy, too sleepy to read, and they help settle me but they don’t actually get me off to sleep. I’ve tried various night time teas with chamomile (which I hate the taste of – I’m desperate), valerian, lavender and a whole host of other things. These just make me get up more frequently to use the loo. I’ve tried night time pillow sprays to no avail. Meditations such as my favourite yoga nidra used to help, but again not any more. I’m at a loss as to what to do and think that speaking with my GP is the last resort. But I’m reluctant to start taking yet more medication, with more side effects, and adding to the list of prescriptions my body has become dependant on.

So for now, I let my body nap for as long as it wants as I know this may be the only sleep I’ll be getting for a while. I find it amazing how the body can survive and continue with such little rest. With my trusty kitty by my side, I’m off to get tucked up in bed and hopefully snooze the afternoon away…

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I might be used to it by now, but every day is probably like living with a cold/flu without the cough or snotty nose. Aches, pains, fevers and fatigue is just a part of every day life, and just because I’m used to it doesn’t mean it’s any easier after a few years.

Every year the dreaded cold and flu season creeps upon me where I shrink away from every person on the bus who sniffs and hold my breath in the lift when someone coughs. It’s the time of years I rattle with supplements and alcohol hand gel becomes my best friend. Despite having a compromised immune system, I think I’m relatively good at avoiding the lurgy. But when it hits, it comes down like a ton of bricks, casting veil of fatigue like nothing before over me, increasing pain five fold, the germs and ‘usual cold’ symptoms linger on and on and on. Well, if I’m going to be ill I may as well do it properly!

The virus I currently have couldn’t have picked a worse time. I’m about to have six days off work as holiday, my longest break in well over a year, which I’d set aside for studying and a day trip to see a friend. First came the swollen glands, then the sore throat and painful chest all washed down with complete exhaustion. Then I felt better for a day. Then it came back, and along with a blocked, runny nose came dizziness, light-headedness and a feeling of surrealism, altered vision and of course, the lucky bonus of increase fibro and ME symptoms. This resulted in me almost collapsing at work and having to be helped to the work car to be brought home. Not before I’d burst into tears in the toilets first because I was so scared. The funny turns lasted into the next day. I had to be dressed/undressed by my partner and dried off after a shower. Not your average cold you’d think. But it probably is, most people would feel awful for a few days, need a couple of days resting up with soup and hot drinks then be back with a spring in their step.

Living with symptoms and fibromyalgia and ME on a daily basis is tough and tests the willpower of even the most positive of people, but when germs and bugs find their way into that mix, it ends up in a long, drawn out period of awful symptoms and fear that it will never end.

I think writing this blog has just been an excuse for me to get things off my chest after what has been one hell of a week, and it’s definitely not over yet!

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This blog piece is a brief outline of what I do in an average week. By brief I don’t mean I’m omitting some crazy party, long country walk or evenings with friends, I haven’t had energy for that in years. I have just left out the bits where I take medication, the headaches, struggle to get myself in and out the shower, dressed, and the awful insomnia I suffer from. This week I haven’t had the energy to read more than a short magazine article, or even iron my clothes. Every last piece of energy I have is stored up for the important stuff like work and looking after the kitty (who provides endless cuddles throughout). Writing this piece has made me realise just how little I actually do in my week. My week should consist of more university work at least, but it doesn’t. I wish it involved cooking yummy dinners, having tea and cake with friends in the evenings and taking pride in my home. I could go on, so here it is in all of its glory, my week with fibromyalgia and chronic fatigue/ME:

Sunday:

Leaving my wife at home with a hangover, I headed to a local cafe I’d never been to before to try and get some study time in. With a bacon sandwich, a free WiFi connection and a few cups of tea I managed to write a few hundred words of an essay and get a good start on research. Feeling pretty mentally exhausted I headed home after a couple of hours and tried not to feel guilty about my daily nap as I’d had a productive morning.

Monday:

My long day at work always worries me a little, but I had a productive one. Feeling utterly wiped out long before 5pm I slowly made my way home, and as usual, had headed straight for bed. There was no way I would be able to do anything else that evening unless I slept. Two hours later I got up, had dinner and had my daily struggle with my shower. Another night of struggling to get to sleep followed.

Tuesday:

After a few hours of broken sleep I woke feeling rough, swollen glands, a sore throat and chest. I spent the day worrying that I was getting ‘normal’ ill on top of the usual fun stuff. Feeling super poorly by the time I woke from my post work nap I spent the evening in my pyjamas (again as usual) dosed up and knocking back the vitamins in a bid to stop the inevitable.

Wednesday:

After quite a few hours of sleep (it’s always a bad sign when I actually get some shut eye) I woke late on my day off, and felt like a virus had really taken over my already tired body. After calling mom to wish her a Happy Birthday, I headed back to bed with a cop of tea and spent the day there, with no appetite, feeling weak, sore and afraid of how exhausted I felt. With no energy to cook, I ended up eating take away for dinner, probably not the best option so I blitzed up a smoothie with fruit juice, berries, banana and natural yoghurt later in the evening. Showering was a struggle but I felt much better after a good scrub.

Thursday:

After a rough night’s sleep it was off to work, still armed with my swollen glands and dodgy chest and throat. Work is usually a good laugh but I had slightly too much fun which resulted in a funny turn and feeling like I was about to pass out. After struggling home it was straight off for my rest which found me sleeping for over three hours, long even by my standards. But I awoke in pain, struggling to swallow, my chest hurting and with a locked jaw. My jaw continued to keep locking throughout the evening and night and woke me up with the pain. Still without he energy to cook, I finished yesterday’s take away for dinner.

Friday:

Feeling better in myself today, but in quite a lot of pain, after work I took a diversion home and was exhausted beyond words half way back. I could barely get out of my rain soaked clothes on getting home and headed straight for the usual; bed. I fell asleep with the cat on my side and woke up on my own but in awful pain, and couldn’t get back to sleep. After a long chat with my parents, an evening dosed up in front of the TV followed before I decided to write this blog.

Saturday:

Well, I haven’t got there yet, but I’m hoping for a lie in, lots of uni work, endless cups of tea and kitty cuddles, and of course, a good nap.

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A friend shared this post on Facebook. I don’t usually read long posts like this, or even acknowledge them, but this one really rang true to me and I felt the need to share it to raise awareness, help understanding of such a misunderstood condition, and remind my friends, both off and online, what life can really be like for me.

#Fibromyalgia took hold of my life 15 years ago it was totally unexpected, it just took hold of me and changed my life overnight, people who knew me before #Fibromyalgia know I was a hard working person who enjoyed life, #Fibromyalgia took all that away from me… Don’t judge what you cannot possibly comprehend as if someone had told me about #Fibromyalgia before I was diagnosed I too would not have been able to understand. No one is immune it’s there just waiting for the chance to control your life, all I ask is that my friends are patient and understand sometimes I can’t do normal things without paying a big price a Flare up !

1. My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping yesterday, but I can’t help you with house/garden work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the “aggravating everything disorder.” So don’t make me open the curtains or listen to your child scream. I really can’t stand it.

6. My intolerance – I can’t stand heat, either. Or humidity. If I am a man, I sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression – Yes, there are days when I would rather stay in bed or in the house. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

11. My uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

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People say how lucky I am to only work 26 hours per week. And I guess I am in a way, who really wants to spend 40 hours plus a week at work? Well, I’d quite like to go back to a full-time nine to five actually.

I work so few hours because I really can’t work any more right now. I do this over a four day period with a mid week break which works quite well for me, but I’m still utterly exhausted and riddled with pain after every day, especially my one eight hour day at the beginning of the week.

Working part time doesn’t allow me to spend my time off gallivanting, skipping through meadows, or reliving my raving days. I don’t come home and cook up a daily feast at 3pm every day, or take myself off shopping for something I ‘need’ such as another large pile of books (although I quite fancy doing all of those). It allows me to rest, rest, rest and take additional painkillers so I have more time to deal with the side effects, then have another rest. On Fridays I come home and sleep for the entire evening, because I just can’t function in any other way.

At weekends I’m not bursting with energy after all that rest, I’m ready for more rest. Which is really bloody boring at times might I add. I’m a bookworm, someone who loves to continually learn, I love going for walks or discovering new places (especially now I live on the coast), I’m a gardener and a baker. But I don’t do much, if any, of that, because brain fog makes it difficult to read much more than short magazine articles, and I can’t walk far because I’ll be so exhausted by the end of the road and my body hurts too much to be able to support myself with a stick or crutches. I can’t bake because I don’t have the energy to do the big clean up afterwards (I’m quite messy – think Selasi in the GBBO) and my gardening consists of keeping my lemon verbena plant alive through the winter.

Amongst all of this I’m half way through getting an Open University Degree. I’ve had to defer twice, and it’s taking me far longer than ever expected, but somehow I’m doing it. I’ll be honest, I can’t really remember a thing I’ve learnt along the way when put on the spot, but I’m getting good at answering University Challenge questions with my parents so it’s in there somewhere. I’m dreading the exam next spring, but what will be will be. If it doesn’t work out I’ll just try another module without an exam.

Then there is the financial freedom that working full time could bring. My wife currently earns considerably more than me and the is some pressure on her to keep it that way, much to my dismay. But I’m lucky to be in a job I love and earn enough to pay my half of the bills and buy all the boring household groceries (she gets the fun tasty food and treats) and still be able to afford to treat myself to a few subscription boxes a month.

So, while working part time isn’t all doom and gloom as it means I actually get to see my wife on her incredibly unsocial shift pattern, and I get extra cuddles with kitty, it’s not all it’s cracked up to be when you work less due to health reasons.

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…heading out in the sunshine. Off to the beach, or to the park, maybe a trip to the local shops. Ah, a perfect British summers day.

Perhaps not. I have to go to work tomorrow, and I went to the shops yesterday evening, and I worked all last week. So today will consists of reading, resting, snoozing, and maybe an episode or three of Bones.

But I still managed to get my fifteen minutes of vitamin D rays in the courtyard with the small plump furry one.

I marveled at my poor neglected plants which have somehow managed to flower.

And then I headed inside for a sit down, with a cup of ginger tea and a magazine.

Days like today may not be what they were a few years ago, but I’m thankful for the sunshine, the beautiful flowers, my furry friend and endless cups of tea.

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It’s been a tough few weeks, a tough 2016 in fact, health wise and stress wise. I won’t bore you all with what’s happened but it’s made a scary flare up of ME symptoms bubble over the top and pour into my life, ruining just about any plans I had. Many days have been spent completely resting as I’ve been too unwell to do much at all, plans with friends repeatedly cancelled and it’s just been me and the cat while my wife seems to work endless hours in her job as a train conductor.

Trinny

I’ve been accepted onto an NHS CFS/ME management course which takes place every second Wednesday until July. There’s only been two groups so far but already I know this is exactly what I need to sort my life out. I’ve connected and made friends with people who ‘get’ me, who understand what’s really going on when I say I’m exhausted, and the people who run the group are fantastic. The ins and outs of the group are for another blog post, when I’m feeling well enough to go into all the great stuff we’re learning and remembering, but the main point they keep drumming into us is to be kind to ourselves. And finally, this has made me listen.

I’m currently on a short break in between jobs, and ordinarily this would have made me turn into a a crazy woman, feeling I need to justify what I do with my time off, doing something I deem to be ‘useful’. But instead I’m resting. I’m working my way through some courses by Susannah Conway and flicking back through her book as her influence really revolves around the fact it’s ok to be doing what I’m doing, it’s ok to be kind to myself.

I’m resting lots, I’m stretching and meditating with crystals in spots of sunshine that briefly pop into my basement flat, I’m trying to eat as much fruit and veg as possible and stay away from the sweets and my beloved crisps. But if I slip up, it’s ok, it happens, and tomorrow is a new day. A new day for my morning kitty cuddles, to put on my new Kalula Colour Therapy Jewellery, for my enormous breakfast mug of tea, to catch a brief ray of sunshine. It’s ok.

Blue For Balance

I’m trying to take a photo or two everyday, even if I don’t leave the house, to capture my all the things that are good in my days and weeks of trying to recover. My cat obviously features in a lot of them as she’s always by my side. But there’s shots of brand new notebooks, treats that I ordered from America a few weeks ago that have started to arrive, bits and pieces I have found given to me by my wonderful grandma in the months before she passed away last autumn, endless cups of English Breakfast and Pukka Ginger Tea…

I suppose this blog is something I want to be able to look back on when I’m having a bad day, a bad hour, feeling guilty for resting or not leaving the house.

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The idea to write this post was given to me by my fellow Twitter and blogging buddy, Ness who suggested it’d be a good idea to share my story of yoga and chronic illness.

Lets start at the beginning; roll back about eight or nine years. I was a member of a Virgin Active gym where the local Z-list celebrities were said to go, not that I can say I ever spotted one. Pre-illness days involved lots of running, body pump classes and the genius idea that yoga would be easy, and almost certainly relaxing. I turned up for a two hour session in a room above the pool, it was hot, humid and the mats smelt of sweat and germs. A beautiful zen-like teacher swept in and began her class by singing to us, ahhh perfect. About ten minutes later I was making a ‘basket’ with my hands and someone was pulling my legs into a headstand position. All I remember was somehow managing to drive home and making it as far as the dog’s bed in the hallway and joining him on it. I was in agony for days. For some strange reason I continued to go to those classes until I left the gym. Then I moved to Brighton, got splattered by a bicycle and life was never the same again.

In January of 2015 my wife found a deal on Groupon for a year’s membership to Yoga Download for £18. We’d been chatting about how unfit I felt and how I missed exercise and that I’d like to try yoga again. For £18 I had nothing to lose, so I signed up. The selection of classes on the website was amazing, and I went in hard. 45 minute classes every evening at advanced beginner, because obviously I knew what I was doing from my previous yoga experience, right?!

I now know I should have only practiced the very basic classes and moved into more restorative poses such as child’s pose for the asanas I couldn’t, or shouldn’t, have attempted. My body was sore and I was feeling more tired than ever, yet I had an immense feeling of wellbeing. Despite the classes I attempted being too hard for me the poses and focus on breath had actually done me some good.

At the time I was struggling with my anxiety. After a few years of being stable and knowing where I stood with it, it reared it’s ugly head and as threatening to make my life a complete misery once again. It wasn’t possible to just remove the stresses in my life as one very unhelpful GP suggested, but I inadvertently found that yoga really helped me. The focus on slow, deep breaths, as simply as it may sound, was just what I needed as a chronically worried, anxious, stressed out girl. Yoga Download also has meditations available so I decided to try out a yoga nidra practice.

I’ll be honest, having dabbled in meditation before I was dubious as I really didn’t seem to be able to get the hang of it, but I needed support with my anxiety so I decided to give it a go. As soon as the recording began the soothing voice of the very lovely yoga teacher Celest Pereira had me zoned out and dozing off well before the 25 minute session was up. I still use this recording on a regular basis as it is everything I need to calm me down. From the relaxing body scan, to the counting of breathing and focusing on certain sounds in the environment around me, it really is just perfect. I strongly recommend checking out her website and Youtube channel, while lots of the videos are for the more advanced yogi, she doesn’t forget about us beginners and her videos are just so positive and upbeat you come away feeling pretty damn great!

Anyway, back to yoga. In addition to Yoga Download I started attending classes at my local studio, a five minute walk away. One or two classes a week was such a lovely get away from reality. I explained to the teachers my health problems and they were always so supportive, gathering blankets, bolsters and cushions to support my practice. Ultimately, I couldn’t afford to keep paying for classes, and in the end my health got so bad last year I stopped practicing. Whilst I was gaining physical strength, muscles were reappearing and mentally I felt much better, my body was crying out for relief, a rest and just to relax in some gentle poses instead. Overdoing yoga didn’t cause the downward spiral of my health, but the way I was forcing my body to practice for an hour or two at a time really wasn’t helping.

Fast forward to 2016, I have practiced yoga 5 times per week for the last two weeks. Doesn’t sound like much does it? Well for me it’s one heck of an achievement. I’m going through a pretty tough flare up at the moment but have discovered a more suitable website with lots of very short beginner classes, some less than ten minutes long. Movement For Modern Life seems to be well suited to my abilities. The longest class I have completed is fifteen minutes and the shortest is four. Bedtime yoga has sent me into a deep slumber for the first time in months, meditation classes have calmed me down on painful days and the overall sense of wellbeing it’s given me is such a wonderful feeling to have.

A five minute class is an achievement, I learnt to recognise that the hard way. Five minutes of yoga can leave you feeling chilled out and wonderful if you let it. Don’t push your body, when it’s ready to move forward it’ll let you know, but in the meantime keep it simple, your body will thank you for it in the long run.

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Last summer I was contacted by Alisha Nurse. She’d written a short handbook based upon here experiences of living with fibromyalgia and asked if I’d have a read to see what I thought. Well, the months ran away with me in a blur of flare ups, hospital appointments and a few stressful events, and I never got round to reading the book. I never forgot about it though, infact I thought about it quite often. I made it one of my New Years resolutions to read the book, and last night I finished it.

The book isn’t too long, 78 pages on my Kindle Fire, and it’s clear from the beginning it’s written by a fellow sufferer. I instantly found I could relate to the author and this made me want to keep on reading and not put my Kindle down until I was finished. Many books I read on health subjects tend to be patronising, use positive thinking and distraction to make it go away kind of books, but not this one.

Alisha is honest about the ups and downs of life with both fibromyalgia and clinical depression. She begins by telling us about her childhood, family remedies and about her battle in both getting diagnosed and getting the help she really needs. The fact this books touches on her ongoing fight with depression is a good move in my view, lots of people with fibromyalgia have depression or know someone who has it, so it makes it even more informative to read, leaving you feeling closer to Alisha and like you really know her.

My favourite part was the recipe section for her healthy, clean diet, and the fact that it includes so many recipes based on her family history in Trinidad. Ginger tea, garlic tea, fish, burgers, soup, there’s something there for everyone, even fussy old me.

She also details the supplements she takes, some of which I take too, so it’s great to know we have quite a lot in common and I’m heading for the right track. She talks about pacing, getting back to work and meaningful living, all of which is not necessarily new to us, but combined in a great little handbook together like this, is just the thing I personally have needed to re-evaluate where I am with my health and what I can do to improve things without waiting for the help of the NHS on my months long waiting lists.

Ultimately the book details how Alisha has learned to live her life as full as possible, whilst managing the symptoms of her illnesses as best she can. And I think she’s cracked it. It sounds like after much trial, error and a little help from her friends, she back on track, and she knows exactly what she needs to do to keep it that way.

I personally have found the book empowering and, as I said above, it’s made me step back and take a look at how I am dealing with my health, what I can do to improve it and how I can keep it that way.

If you suffer from fibromyalgia I would strongly recommend this book to you. It took me just a couple of short evenings to read, was fibro fog friendly, and is something you can constantly refer back to if needed, if not just for the yummy recipes.

You can find Alisha’s website here and it’s also worth giving her a follow on Twitter if you’re a Twitter gal, or guy, and of course there’s Facebook.

I really hope you all find the book as interesting and useful as I have.